In the care home, i walked up to my gaunt and ephemeral-looking man, who asked, who are you? After he understood it was me, he trembled and hugged me intensely with tears in his eyes.
We came home to a busy day in my home office and he slept most of the day and all night.
The next day, things changed. He was increasingly anxious, not helped by my busyness – it being press day. With a sad resignation, I gave him extra meds, as he babbled about Hitting the road. I felt so rotten, because at the Lodge he again had no extra meds in a week.
I can’t seem to get the hang of it and it is clear to me that he is better looked after in the Lodge, no matter what he thinks, and no matter how hard I try.
The truth is, I have a life of my own which constantly distracts me from his needs. I do not even have the desire to do any more than I have for the last 10 years. Having cut back and back and back on my involvement in my career( not totally unhappily because I did used to work too hard although I enjoyed it) I just don’t feel I have any more to give.
The Seniors Health nurse, who phoned today, went out of his way to tell me I had done a great job of caregiving to date, and I sort of believe him.
The trouble with this disease is that no one ever wins. No miracles. No cures. No matter what you do, how hard you try, this disease always wins and steals your love further and further away … until death sets you both free.
Last few days have been mostly … well, irritating to the point of wit’s end. Endless questions about “When we are going home,” coupled with a lack of comprehension so deep that the use of fork and knife is becoming problematic, and he frequently asks “Who are you?”
Perhaps it is all aggravated by the fact that i know have a week’s respite schedule for each of the remaining months of the year. We will see if next week’s break at The Lodge is as positive for Don as the first one, because I am truly at the end of my rope.
Certainly here at home he is agitated, restless, very afraid (yesterday he refused to eat his hash browns – his favourite breakfast – because “I’m afraid of them”) and easily irritated. Not exactly a happy camper, and not easy to handle. I have resorted to more medication and I am trying to stay aware that under the layer of reasonableness (is that a word?) induced by the meds, there is a deep and plummeting dementia.
Fortunately, after the medication took effect, I was able to find some photos of Ontario under snow, and that seems to have settled the prospect of driving 3500 miles for now. He, who used to read maps and the atlas for recreation, has no concept any more of distance, space, geography.
He seems to have given up on money, having decided the business cards with his poem on them are as valuable (and who is to argue with that!) He can be diverted by the birthday cards I saved for him.This morning i sat there showing him the cards and thinking to myself, how much i would like to have cards addressed to him showing up in the mailbox — just one every three months or so, from all the people who say they care so much for him.
So Don has been home for 5 days, and – yep – the love fest is over. Despite the heart-wrenching news that a beautiful lady from my caregivers’ group lost her love this week (someone whose disease was similar to my Don’s) I feel trapped in a miasma of…. word salad.
Nothing Don utters is decipherable, yet he wants answers.
He is roaming the house choosing things to pack when we “go home” tomorrow morning.
He runs off on the caregiver when I leave the house for just an hour. I am trapped and desperate, and he is constantly afraid. He wakes me up regularly to ask plaintively, “What are we going to do? What can we do?”
And I don’t know whether to weep or scream, neither of which will help. My head aches. My heart breaks, over and over. I cannot stand this pain. And he is so afraid, whenever I let up on the medication.
All this after he did so well in the Lodge. I envisioned a home coming more peaceful, a calm descent.
I have resorted to extra medication, more than ever, (Note the Lodge used none! Oh, more fuel for guilt) not because I am afraid of his multiple delusions – there is no hint of violence – but because I simply cannot stand it.
I, like my love, have no words for this unending nightmare.
Like all humans, I cry out, “What did we do to deserve this?”
Tomorrow is the end of the seemingly-endless week of respite, and I got almost nothing done — the garage isn’t cleaned, the cupboards are not tidied, the garden isn’t ready for winter. What I did do, is have long wandering uninterrupted conversations with friends, and walks in the woods and at the beach. Got my hair cut, bought new jeans…..
I cried my eyes out that first night, and later I started sleeping 10 to 12 hours each night. I talked to myself incessantly. I found it hard to remember that I didn’t have to schedule every little thing around care for Don. It was weird to just be able to do what I wanted.
And I found I didn’t have a clue what I wanted.
By the end of the week, I suspected that I was addicted to being a caregiver – I didn’t know what to do, I didn’t have him for an excuse, and I didn’t even know what or when I wanted to eat. I did enjoy my respite time enough that I think I can get over the addiction.
I had no idea what kind of price I was paying for the caregiving, and I am thankful for the case manager and health staff who insisted it was time for this next step.
I love being alone. I have known for years that price I pay for this love. The dementia and the shadowing just makes it much worse.
More, I realise I will not have an idea who I am or what I want to do with my few remaining years on this sweet sweet earth until my responsibility for Don – at least the daily responsibility – is relieved. This is what I need before I die – time to be with and for myself in the universe.
Is that ethical? Practical? Shrug. It sounds to me like Don was pretty content in the very competent care of others. There was a heart-breaking moment when he told one of the caregivers that his wife had died, and was very happy to be told that was not the case.
So what’s next? Two weeks at home together and by coincidence, there is another week of respite scheduled. The silence of the stars awaits.
Here is a video from a person with early onset dementia about how to talk with someone with dementia – it seemed to me much like what my love would say.
A conversation about dementia